Congenerous Ulcerative Colitis

By Happy1

Last Updated:

1 min read

I have SLE Lupus, Sjogens disease, Raynard's disease, and the doctors are not sure if I had a mini-stroke.

Managing multiple conditions

I spray nitroglycerin under my tongue when my heart rate increases. Now I've been diagnosed with Ulcerated colitis and the meds, like prednisone, are not working. On Wednesday morning I had a Benlysta infusion and I couldn’t even barely stand. I used my cane, my husband had to assist me in the shower. I felt weak, like I wanted to pass out. I don’t get it. My back pain is unbearable.

Never ending pain

The doctor is sending me for a bone scan and a breast exam. I feel like I have so much going on. My goal was to go swimming a couple of days a week. I do walk when I can. I have fallen pretty bad but it eventually healed. Today I took my pups and got a walk in. I was so proud of myself. I didn’t make it all the way but it was good. I did few more things, I ate lunch then, BANG, cramps that felt like a Charlie horse in my stomach. It was so painful. I also have a migraine. I try to get through it but I end up crying in pain and taking my pain medicine. Whew 😰 crazy right? That’s all for now hope you’re all doing well and hope you had a great holiday and happy new year 🥳

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Racquel H. Dozier Member
Last Updated:
<inline-mention username="Happy1" user-id="4537207"/> First welcome to the forum. We are glad you have found us I am sending you gentle hugs. It seems like a waterfall of issues that can come on us so suddenly. Between pain, brain fog, fatigue and just trying to get through the day it can be overwhelming. I am happy that your husband can help you on those rough days. And the dogs will always help us get outside and feel alive once again. It’s so hard to manage it all but I am so proud of you for still trying to move to feel a little less painful. How long have you taken benlysta? Have you spoken to your doctor about how you feel afterwards? What other medications are you on? I ask because sometimes our body reacts to meds . I am holding space for you to get some relief and to get answers. We are here to support you. Thank you for sharing a little about what you’ve been going through. ~Racquel ~team member
1. Happy1 Member
 Last Updated:
 <inline-mention username="Doreen H" user-id="4211472"/> Thank you so much for your support. I am still fighting a very difficult virus and now on antibiotics for a week see what happens. I still have low fever but the good news is that it is lower lol. I made a decision to drop the GI dr and waiting for new one. Tired of all the strong steroids! And I never met the guy. My dr and I are going to go through meds together I’m not sure if I will continue with most of it if it isn’t side affects it’s lupus I’m not sure what is worse at the moment. I hope you’re doing well and again thank you for the check in. Joy
2. Doreen H Community Admin
 Last Updated:
 <inline-mention username="Happy1" user-id="4537207"/>, I will be keeping you in my continued thoughts. Hugs, Doreen (Team Member)
kimiling Member
Last Updated:
test
1. Doreen H Community Admin
 Last Updated:
 <inline-mention username="kimiling" user-id="9946553"/>, Was this an actual "test" or are you suggesting Happy1 get further testing? Thank you, Doreen (Team Member)